Jump to content

Baby Charlie Gard case


keano77

Recommended Posts

Apparently he now has US citizenship and will go to the States.


From what I have read the American doctor who thinks he can help is not a quack but a bona fide physician.


I don't have any strong feelings about the case one way or the other but I would hate to be in either the parents' shoes or the shoes of the GOSH doctors and nurses.


I think it's a sad situation which has had far too much publicity.



I

Link to comment
Share on other sites

A case where there are no winners. I understand the parents fighting for their child, but I have no doubt the medical staff at GOSH have his best interests in heart as well.


The US doctor is offering, at best, a 10% improvement. That's 10% of not much.

Link to comment
Share on other sites

I know someone currently working on PICU at GOSH; she says the staff there find it really tough. There's a recognition of the rights of the parents and a deep empathy with their need to do everything they can to help the child, balanced with the medical knowledge of how little can be for him.


Personally I'm just so glad it's not me in that position, and I pray it never is. I have no idea how they get through the day.

Link to comment
Share on other sites

This child is dying. Infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS) has no cure and is fatal. He has reached the terminal stage and the life support does not stop the progression of the disease. MDDS starves muscles, kidneys, and brain of the energy needed to function. He also suffers from epileptic encephalopathy, which causes frequent seizures and has extensive, irreversible brain damage (both at the structure and cell levels).


The parents were in a place where they had agreed to let go (having lost two court challenges). But then Trump and the Vatican and a physician that have not seen the relevant medical files made claims that have given false hope in a very difficult case. Taking a child to America, when the outcome will be the same, is just prolonging the innevitable. I completely understand the pain the parents are in, but they are in denial. It's time for them to let this poor child go.

Link to comment
Share on other sites

There was a great documentary a few years ago about working in a hospice - clearly St Christophers in Sydenham - a happy but of course sad place, where the very dedicated staff will also have a weep when someone passes on. Even more so at a childrens hospice no doubt.


I expect that GOSH will be just as sad when they can't save a child. I suppose that time will tell on this one, but similar decisions will be made every day without the same media interest.

Link to comment
Share on other sites

The syndrome is one of those genetically inherited disorders where there is a 1 in 4 chance of a child inheriting it. So the mother and father are both carriers. Other examples are cystic fibrosis, sickle cell disease, Tay Sachs, types of muscular dystrophy etc etc

The people who are sending death threats to the medical staff should be arrested.

Link to comment
Share on other sites

There is a lack of medical understanding from the public on this Uncleglen. People threatening hospital staff or anyone are clearly in the wrong. The media angle seems to be one of parental right vs doctors. But this case is not about that at all. All of the arguments presented in court are medical ones, based on complex medical evidence. This I think is the problem with media involvement on this. No doctor or nurse ever takes the decision to withdraw life support easily. And even if kept on life supported indefinitely, this baby will still die. This is what those making threats don't understand.
Link to comment
Share on other sites

I worked at GOSH for 17 years and I can honestly say I never saw a child they could have done more for. The problem tends to be that the child is pushed too far, just so the parents know everything that could be done, was. No one has rights over any child, only responsibilities, and sometimes the best thing to do is to prevent further suffering.
Link to comment
Share on other sites

I am coming from quite an uninformed position here, and have been lucky enough to recently become a father to a healthy boy.


What sits uncomfortably for me is that anyone apart from the parents can have the final say on issues relating to the child. It just doesn't sit right with me that a hospital/judge/state can determine a course of action that the parents don't agree with.


Really interested to hear others thoughts on this.

Link to comment
Share on other sites

jacks09 Wrote:

-------------------------------------------------------

> I am coming from quite an uninformed position

> here, and have been lucky enough to recently

> become a father to a healthy boy.

>

> What sits uncomfortably for me is that anyone

> apart from the parents can have the final say on

> issues relating to the child. It just doesn't sit

> right with me that a hospital/judge/state can

> determine a course of action that the parents

> don't agree with.

>

> Really interested to hear others thoughts on this.



I think that's a huge moral/ethical can of worms.


If parents should always have the final say on anything relating to a child, many children would lead horrendous lives of mental and physical pain.


As indeed some already do.


I'm not pretending to know the answer or where lines should be drawn, however.


Suicide used to be illegal in this country. Euthanasia still is. We don't even have a say in whether we can stay alive if we feel our lives are not worth living.

Link to comment
Share on other sites

jacks09 Wrote:

-------------------------------------------------------

> I am coming from quite an uninformed position

> here, and have been lucky enough to recently

> become a father to a healthy boy.

>

> What sits uncomfortably for me is that anyone

> apart from the parents can have the final say on

> issues relating to the child. It just doesn't sit

> right with me that a hospital/judge/state can

> determine a course of action that the parents

> don't agree with.

>

> Really interested to hear others thoughts on this.



While I can see what you mean, if you think about it there are many points in law where doctors (and others) are allowed to make decisions for the child which the parent does not agree with. They generally revolve around cases of abuse or neglect, and of course that's not what's happening here, but we certainly have a system where doctors can make the case that parents are not choosing the best interests of their child.


In this situation it's a terrible grey area. On the one hand their are experienced medical professionals who know that this is not a life worth living. And on the other the poor child's parents who will try anything. I'm a parent too, and I understand. But parents aren't always allowed to have the final say regardless, and that's why it sometimes ends p in court.


Just because I'm a parent, it doesn't automatic mean any decision I make is right.

Link to comment
Share on other sites

I do see that, and I guess where I am coming form speaks to your point. The state/authorities step in where harm is being caused criminally, this case doesn't fit that at all. That's where my unease comes from. I guess I sympathise in that I know i would want to do anything, ANYTHING, for any measure of improvement.
Link to comment
Share on other sites

jacks09 Wrote:

-------------------------------------------------------


> What sits uncomfortably for me is that anyone

> apart from the parents can have the final say on

> issues relating to the child. It just doesn't sit

> right with me that a hospital/judge/state can

> determine a course of action that the parents

> don't agree with.


What would you say if the position were reversed and parents were trying to block treatment which would keep a child alive - for example a Jehovah's Witness trying to prevent a life-saving blood transfusion? Would it still be acceptable for the parents to have the final say, even if it meant the death of the child? The wishes of the parents must be taken into consideration, but they cannot always be paramount, for they may not always (often for the most understandable of reasons, as in this case) be in the best interests of the child.

Link to comment
Share on other sites

On the other hand to what I said above - life support is turned off so quickly these days - often before close relatives even have a chance to get bedside. If it had been an older person rather than a baby I think it would have been turned off very quickly.
Link to comment
Share on other sites

rendelharris Wrote:

-------------------------------------------------------

> jacks09 Wrote:

> --------------------------------------------------

> -----

>

> > What sits uncomfortably for me is that anyone

> > apart from the parents can have the final say

> on

> > issues relating to the child. It just doesn't

> sit

> > right with me that a hospital/judge/state can

> > determine a course of action that the parents

> > don't agree with.

>

> What would you say if the position were reversed

> and parents were trying to block treatment which

> would keep a child alive - for example a Jehovah's

> Witness trying to prevent a life-saving blood

> transfusion? Would it still be acceptable for the

> parents to have the final say, even if it meant

> the death of the child? The wishes of the parents

> must be taken into consideration, but they cannot

> always be paramount, for they may not always

> (often for the most understandable of reasons, as

> in this case) be in the best interests of the

> child.


In that example it is clear that harm will be caused to the child, that doesn't appear to be the case in the CG example, if i am mistaken please do say. I guess there are no right answers in this horrible case.

Link to comment
Share on other sites

jacks09 Wrote:

-------------------------------------------------------

> rendelharris Wrote:

> --------------------------------------------------

> -----

> > jacks09 Wrote:

> >

> --------------------------------------------------

>

> > -----

> >

> > > What sits uncomfortably for me is that anyone

> > > apart from the parents can have the final say

> > on

> > > issues relating to the child. It just

> doesn't

> > sit

> > > right with me that a hospital/judge/state can

> > > determine a course of action that the parents

> > > don't agree with.

> >

> > What would you say if the position were

> reversed

> > and parents were trying to block treatment

> which

> > would keep a child alive - for example a

> Jehovah's

> > Witness trying to prevent a life-saving blood

> > transfusion? Would it still be acceptable for

> the

> > parents to have the final say, even if it meant

> > the death of the child? The wishes of the

> parents

> > must be taken into consideration, but they

> cannot

> > always be paramount, for they may not always

> > (often for the most understandable of reasons,

> as

> > in this case) be in the best interests of the

> > child.

>

> In that example it is clear that harm will be

> caused to the child, that doesn't appear to be the

> case in the CG example, if i am mistaken please do

> say. I guess there are no right answers in this

> horrible case.


In the 70/80s you would hear of people in comas for years who woke up.


What would be the moral case for keeping a baby alive artificially on the off chance of recovery (say it's 10%) in 10 years time ?

Link to comment
Share on other sites

jacks09 Wrote:

-------------------------------------------------------


> In that example it is clear that harm will be

> caused to the child, that doesn't appear to be the

> case in the CG example, if i am mistaken please do

> say. I guess there are no right answers in this

> horrible case.


As far as I understand it (which is not far) the doctors' contention is that in keeping Charlie on life support they are keeping him alive in pain for no purpose and without hope of any improvement, so in their view harm is being caused. His mother, to her immense credit, admitted in court that she would not have him kept alive in his current state, but she and the father believe treatment elsewhere would lead to an improvement.


Obviously the example I gave is a far more clearcut case for state/medical intervention, I was just asking if it sitting uncomfortably with you that any one but parents should have the final say in issues regarding a child should be applied in all cases.

Link to comment
Share on other sites

rendelharris Wrote:

-------------------------------------------------------


>

> As far as I understand it (which is not far) the

> doctors' contention is that in keeping Charlie on

> life support they are keeping him alive in pain



I think this is an important part of it.


Because of his state, he cannot signal that he is in pain, but as I understand it the doctors think he is.


If it was certain that he wasn't in pain, that might somewhat alter the situation.

Link to comment
Share on other sites

If we had a medical system that owned up to its

own mistakes and wrong decisions was more open

when families are looking for answers, this would bring a different respect. When a case comes to court where the parents not only have hope but are being offered something that mag help.who has the right to take that asay.A syst that undeniably saves lives but also causes , suffering (albeit attempted control), with premature children, and the child does not survive. This may seem off the mark, but hospital births on there own, take the choice away from parents if something is wrong.

Link to comment
Share on other sites

jacks09 Wrote:

-------------------------------------------------------


>

> In that example it is clear that harm will be

> caused to the child, that doesn't appear to be the

> case in the CG example, if i am mistaken please do

> say. I guess there are no right answers in this

> horrible case.



That's why it isn't ethically clear cut in this case. Some argue that quality of life is so low that it equates to harm to preserve life, others disagree.


That's why, as you say, there are no right answers.

Link to comment
Share on other sites

TE44 Wrote:

-------------------------------------------------------

....

> This may seem off the

> mark, but hospital births on there own, take the

> choice away from parents if something is wrong.


So wide of the mark in every respect as to completely miss it, I'd say.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Latest Discussions

    • you know when you take your pro-cash stance too far? yeah....
    • Easter Bunny Bonus Week 29 fixtures...   Saturday 30th March Newcastle United v West Ham United AFC Bournemouth v Everton Chelsea v Burnley Nottingham Forest v Crystal Palace Sheffield United v Fulham Tottenham Hotspur v Luton Town Aston Villa v Wolverhampton Wanderers Brentford v Manchester United   Sunday 31st March Liverpool v Brighton & Hove Albion Manchester City v Arsenal   Tuesday 2nd April Newcastle United v Everton Nottingham Forest v Fulham AFC Bournemouth v Crystal Palace Burnley v Wolverhampton Wanderers West Ham United v Tottenham Hotspur   Wednesday 3rd April Arsenal v Luton Town Brentford v Brighton & Hove Albion Manchester City v Aston Villa   Thursday 4th April Liverpool v Sheffield United Chelsea v Manchester United
    • A repetitive tried and tested cycle that seems to be slowing down in London thankfully. Brixton was the start. Councils consciously and purposely let an area decline until that area is next on the list for social and ethnic cleansing and ultimately gentrification. In come the first wave of arty/ creatives to squat and house share. A few coffee shops and cool but inexpensive cafe/ bars and art spaces open up. The crackheads, dealers and other assorted criminals who were once left to operate openly and brazenly to sell, shop lift, mug, beg, purchase,  publicly consume on decent folks doorsteps, stairwells,in bin sheds and without fear of the law begin to be targeted, rounded up and moved on. A few more jaunty and sustainable coffee shops/ bars appear . The Guardian and other facilitators in the media jump on the bandwagon, first claims of vibrancy are rolled out. Next step a few cool retro clothing shops pop up selling ' reclaimed Levi's for more than they originally cost and ten times the price of what the recently departed charity shop charged. Foxtons open a branch and the arty types and first wavers/ drivers have there first moan about there initially paltry rents going up. The guardian do a generic lets move to Brixton, Dalston, Hackney, Deptford, Walthamstow type double pager. Interview a graphic designer or two who have just bought a former crack den on the manor for next to peanuts. They will later bemoan the next wave who have more money than them. Cool, edgy and vibrant are now the buzzword bingo must use lingo. Few more coffee shops ( how original ) Pop up everything,. Organic and sour dough move in. The night time economy starts to thrive, more cool bars and eateries open. More squats and the last crack house that was once one of many are cleared out. Second wave is around the corner.   All of a sudden there's a visible police presence again and the streets are safe for fun seekers with plenty of disposable cash to chuck about on a dose of vibrancy with added coolness. By this stage even the locally brewed beer is organic. There's queues outside the newly arrived organic, sourdough, artisan and sustainable bakers. Instagram has Brixton trending. The greasy spoon of thirty year has gone cause the lease is up and the landlord has hiked the rents up by 60/70%. Followed by small family run independents that served the community  for decades and more.  The local characters, activists, eccentrics are getting less and less. There's a new show in town for a week or two and until the next brand arrives. Brewdog move in. Former job centres are converted into bars but peak edginess means it's still called the job centre. Followed by a couple more chain eateries. The resident DJ'S and music venues are replaced by another generic brand boasting guest chefs. The Guardian lifestyle section is now on it's fifth or sixth orgasm. Turn a few pages and hypocrisy is rampant with articles on the evils of gentrification, foxtons, capitalism, social cleansing and unaffordable housing. The middle classes continue to arrive in there droves to buy into the vibrancy and multiculturalism supposedly on offer. There isn't much multiculturalism going on at the packed latest place to eat, drink and fart. The multiculturalism on show comes in the form of bar staff, doorman and cheap as chips uber drivers and delivery workers. Rice and peas, jerk everything, red stripe at six quid a can from some hipster haunt that is currently flavour of the month and the place to be seen. The first wavers are now blaming the latest hedge funded brand that's pulled into town for driving gentrification and there soon to be hastened departure to be first wavers again somewhere else. Less cool but up and coming here we come. Covid has certainly helped/ been a factor in slowing down the process of gentrification. I also think it may be the driver for almost putting a stop to it. Remote working, less need to move to London to be near an office, less disposable cash, sky high rents, worthless degrees that relied on that disposable cash , different priorities, knife and gang crime and a large dose of much needed realism has put a huge spanner in the works for the shitty process and cycle that is/ was the gentrification and social cleansing of working class London. Manchester and Liverpool is next on the list for the planners. Thankfully.
    • Can you just queue up to withdraw cash or are other transactions like stamp purchasing required?  Do M&S do cash back?
Home
Events
Sign In

Sign In



Or sign in with one of these services

Search
×
    Search In
×
×
  • Create New...